Friday, May 04, 2007

You lied to me

Here is an essay written by Cameron Page, presented with his permission. It recently won an award called the Marguerite Rush Lerner Award. This prize is given annually to a Yale graduate student in one of the health sciences.

“You lied to me.”
No one had ever said that to me in the hospital before.
“Why did you lie to me?”
Why, indeed?

I had met her the previous day, when she brought her son to Coptic Hospital in Nairobi, Kenya, where I was doing an infectious disease elective.

Her son was eight years old and HIV-positive. He had a fever and was breathing fast. Jason, the infectious disease fellow from University of Minnesota, listened to the boy’s back and looked at his X-ray. “Pneumonia,” he said.

While the son slept with an oxygen mask on, Jason spoke with the mother: “He is very sick. The first 48 hours are the toughest. It’s only after that that we can start to be optimistic.”

Jason excused himself for a meeting. I didn’t have a meeting. I sat at the foot of the sleeping boy’s bed, across from his mother, where the sheets were stamped “CH” in large faded blue letters. The mother put a thumbnail between her teeth; folded and unfolded her arms; looked at me and then away. She wore a flowery print dress with lace at the neck, as though she’d been suddenly called away from a formal ball.

“What will happen if he can survive this one?” she said to me.
“Well,” I hesitated, “it depends. He may be developing resistance to the anti-retroviral medicines, in which case we would need to switch him.”
She looked confused. “You give him new medicines?”
“Maybe. It depends on—“
“Better medicines?”
“Well, just different. He won’t be resistant to them.”
“The new medicines, they will make him healthy?” She was leaning forward now.
“Well, his viral load should drop, and hopefully his CD4 count will start to rise--“
She tossed off my jargon. “They will make him better?” Her eyes carried not just a question, but a plea.
I paused.
“Yes,” I said. “They will make him better.”

With the new medicines, I said, her son wouldn’t get sick as often. He wouldn’t need to take prophylactic antibiotics every day. I told her about other children I’d seen, just as sick as hers, who had made complete recoveries. I described their weight gain, their increased energy. How they played soccer in the playground after school, just like the other children.

Her smile was a tiny burst of joy, like the hug of a small child.

When I left, she squeezed my hand. “You are a good doctor,” she said. I brushed away the compliment. I told her I would talk to the pharmacist about the new medicines.

The boy died later that night, while I was eating dinner at a Korean barbecue restaurant.

The next morning she was waiting for me. Her face told me more than the empty bed did. Her eyes tore at me with unfocused rage, and despair.

When she called me a liar, I thought of defending myself, reminding her that she had asked me to speculate. It was her hypothetical question to which I’d responded. But I stopped before I opened my mouth, because that would have been another lie.

The truth was that I had indulged in the fantasy too. I had taken comfort in imagining her son’s long, happy life. Our bedside chat was as much for my benefit as hers.

She lectured me, yelling in my face. What about the weight gain? What about the soccer in the playground? She was firm, business-like. She wanted an accounting for every misleading statement I’d made. Rigors of anger and injustice swept across her body.

She had asked me to comfort her, and I had built that comfort from the only material I had: hope. I had done it unthinkingly, instinctively. I had not considered that hope is a shaky scaffolding, and when it collapses, the fall to earth can be long and the landing hard.

A thousand fits of rage would not bring her son back, and she seemed to realize that suddenly. Her hands dropped to her sides, and she wept.

We'd had no right to be hopeful so early. Jason had been cold, but right.

In the end, all I said to her was “I’m sorry.” I said it over and over. I was sorry for her son’s death. I was sorry that I wasn’t there when he died. I was sorry I misled her. Ultimately, I was sorry that I wasn’t a better doctor, a doctor who could understand that comfort is a double-edged sword, a sweet that can quickly turn sour.

9 comments:

Toni Brayer MD said...

Beautifully written and haunting. Thanks. TB

Anonymous said...

I cried. Thanks.

dale said...

Dear Cameron,

I just read your essay. Congratulations! Your honesty and compassion are what you should be most proud of as you continue your call to help others and save lives.

The essay caught my attention because of the title...."You lied to me." But, also because Yale was the first medical school where I presented the story of my son's death, and the lack of compassion and honesty that our family received, following. The students stated that they had never had a "patient" present there before. They listened attentively, asked questions, cried, hugged and promised to always remember Justin. They asked how they would know how to console a family since no one had ever taught them how....I told them to listen to their hearts and they would know. You don't have to be perfect, I said.

At the IHI conference in 2005, I had the pleasure of meeting Stephen Lewis, the author of "Race Against Time." Don Berwick had introduced us right before he presented. I was sitting in the front row as Don was speaking about Justin, during his earlier presentation. As Stephen began to present about the deaths of children in Africa from HIV, our eyes connected, but then I looked away..it was too painful. He spoke of the children's caskets and the "other worldly wails" that he heard radiating from the mothers in the hospital wards. They were releasing their devastation in a way he had never heard before. A wail all too common to me but probably not common to most who had not lived this nightmare. We usually "explode" when we're alone. That sound affected him and propelled him to fight the disease even harder. He heard the sounds of death as part of a mother had died along with her child.

Your compassion in your writing is well rewarded and I thank you from that Mom that said you lied, but also from all those moms who know that the warm kindness from their child's doctor, following their death, makes those wails a bit less frequent. She will remember your apology and your determination to save her son, not your perceived lie.

Most Sincerely,
Dale

Dale Ann Micalizzi
Justin's HOPE @ The Task Force for Child Survival and Development http://www.taskforce.org/justinhope.asp

Cameron said...

Hi, this is Cameron, the author of the essay. Just wanted to say thanks for your feedback, I really appreciate it. And thanks to this great blog for providing a forum for it.
all my best,
Cameron

Carole Ferguson said...

This is Cameron's mom and a pediatric nurse practitioner and a newly minted journalist. Right now they are all rolled into one. After decades of work with children and their families, I am weeping but joyful that my son-the-new-doctor is learning the compassion and self awareness that so many in health care lack. Giving from the heart when things go so very wrong is essential. And the truly sincere " I am so so sorry" can siphon off some of the pain.
Carole Ferguson, C-PNP

jessica lipnack said...

I belong to an online writers forum that's been going for close to a decade where we critique one another's work and report on our triumphs (and disappointments). When someone like Cameron wins an award--or even has a piece accepted, there's a long string of Hoorays! and animated fizzing champagne glasses! and clever writerly congrats. But we don't know enough about one another to say, Oh, I know how that writer was raised and why s/he can have such insight into the human condition that of course publication and awards are in order. I know enough about the culture of compassion in which Cameron was raised to be able to say that here. You deserve to have champagne fizzing all over your screen too, Carole. And I am moved beyond my fingers' ability to type it out by Dale's note and by what Honora is reporting first-hand.

Anonymous said...

Having spent several years viewing the world through a gun sight, usually in distant places very different from my New England home, I have seen death in every possible aspect. Frequently I had to merge a group of western soldiers into a native culture and often that merging involved at least being witness to their suffering and death...if not attempting to help them live...or die comfortably.
When death claimed a life it mattered little if disease or war was the cause. The grief, anger, loss and sense of defeat were always the same. Sometimes we were privileged to meet physicians, nurses and even military medics who made a difference in the lives of those left behind when death struck. One such healer, a French nun/doctor, explained that her decades of experience had taught her a valuable lesson: never try to assume the grief of another...simply be open to that person's grief and pain. Learn and accept personal limitations but never stop striving to heal. She taught some very hardened men, myself among them, that we must at such times forget the next mission, the urgency of other obligations for long enough to open ourselves to the pain and the soul of the survivors. At times such as these, she would say, the best thing one can do is to become simply human, vulnerable and caring. Grief creates the deepest loneliness and it is that isolation we must overcome. It sounds as if at least one American in Africa has done just that. Care on, Honora, care on. You are learning how to be a light in others' lives, not a shadow.

Anonymous said...

Recommended:

Trust in a Medical Setting. Hauppauge, NY: Novinka Books, Nova Science Publishers, 2006.

Experience dealing with a host of difficult to impossible situations may help others in their encounters with these difficult and distrusting patients. These individuals may make up a small per cent of patients and family members, probably less than 2 per cent, but take up 90 per cent of energy in coping with day-to-day conflicts that arise from their behavior. Difficulties managing distrustful patients and family members must be dealt with on the spot, and they don’t go away.
Examples come from office experiences or wards, including situations that keep doctors and nurses and therapists awake at night, aggravate waking hours and poison leisure, that is, empirical, based upon experience and observation alone without science or theory. To survive an outrageous patient or relative requires resourcefulness, patience and imagination. Street wisdom learned the hard way is what I present, and without a guide or mentor to soften the bewilderment and sense of failure and frustration that accompanies these individuals. We seldom talk about these difficult, distrustful and sometimes threatening individuals amongst ourselves; rather we suffer and endure them silently, by ourselves. The problem is timeless as recorded in the world’s literature.
Out of the wreckage of human behavior comes valued experience leading to maneuvers and tactics of survival that are appropriate to almost all aspects and settings of human interaction including day-to-day medical care.

Links:
www.novapublishers.com
richardsmithmd.com

Anonymous said...

Recommended Readings:

On Apology, by Aaron Lazare
Let Me Listen To Your Heart Writings by Medical Students, Svahn and Kovak
When Things Go Wrong, by Leape et al
Wall of Silence, by Gibson and Singh